Minister for Health announces €1.5 million to support the development of rare disease services and care
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From: Department of Health
- Published on: 1 November 2024
- Last updated on: 12 April 2025
Minister for Health Stephen Donnelly has announced details of the €1.5 million allocation for the development of rare disease services as part of Budget 2025.
Rare diseases are defined as having a prevalence of fewer than five cases for every 10,000 persons. Collectively these diseases affect around 6% or one in 17 of the population in Ireland.
People diagnosed with a rare disease often require complex and highly specialised care that not only relies on the excellent health care professionals here in Ireland but also benefits from international expertise.
Funding under Budget 2025 will support the provision of care to people living with a rare disease, by providing resources to improve care coordination and by strengthening collaboration with international expertise through the European Reference Networks.
It will also support the further development of the Health Service Executive’s National Rare Disease Office, resourcing it in advance of the soon-to-be-published new National Rare Disease Strategy.
A further €300,000 has been provided to support the evidence reviews that inform the expansion of the Newborn Screening Programme. Significant funding has also been allocated to support the continued development of the Genetics and Genomics Clinical Service. This funding will reduce wait time and improve access to clinical genetic services.
Minister Donnelly said:
"This funding will strengthen resources in our National Rare Disease Office, equipping it for the implementation of the new National Rare Disease Plan as outlined in the Programme for Government.
"I’m very conscious that a rare disease diagnosis can be a very lonely and isolating experience for patients and for their families. When we consider that collectively 300,000 of our population are dealing with a rare disease, it means that collectively, these diseases are far from rare. Collaboration and shared expertise are critical for improved patient services and care, so I’m delighted to provide funding that will support increased partnership through our European Reference Networks."
Interim Chief Medical Officer, Professor Mary Horgan said:
"The funding announced for rare diseases is very welcomed and will ensure that the building blocks are in place to deliver on the recommendations of the new National Rare Disease Strategy when it is published later this year. It will also ensure we can begin to meet the multiple unmet needs of people living with a rare disease in Ireland, their families, carers and clinical teams in advance of the Strategy’s publication."
Chair of the National Rare Disease Strategy Group, Professor Cecily Kelleher said:
"This funding is evidence of the firm commitment by the Minister and the Department of Health to the significant issue of those in our community living with a rare disease. I expect a comprehensive new strategy will be launched soon for implementation in 2025."
Notes
The National Rare Disease Steering Group was established in December 2023 to deliver on the Programme for Government commitment to develop a new National Rare Disease Strategy for Ireland. The new Strategy is expected to be published later this year with implementation commencing in early 2025.